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To Test The Family?

rat toe

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rat toe Rookie
rat toe
Posted

hi my name is becca and I was diagnosed with celiac about a year ago. I had no symptoms, but since I'm type 1 diabetic, they do regular screening and they caught my antibodies for celiac. The problem I'm having is that even though I have Celiac, my parents don't think its necesssary to test my brothers for it--no one else in our family has Celiac, and my parents act as if its just easier to not know when it comes to my brothers. My GI said it would be a good idea to test them, but the pediatritian seemed pretty uninformed and basically said "well, theres really no hurry to find out because teenagers probarbly wouldn't stick to the diet anyways, right?" I was just wondering if there were any parents out there who had a child with celiac and how (and if) you came to the conclusion to test your other children. Any advice would be greatly appreciated.

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lovegrov Collaborator
lovegrov
Posted

Don't know if this will help you, but all celiac experts and the NIH conference on celiac say that ALL first-degree relatives need to be tested. All of mine were, and my 70-year-old father with no symptoms was EXTREMELY positive.

richard

chrissy Collaborator
chrissy
Posted

after we suspected celiac in one child---i had the rest of my kids tested---we discovered that we have 3 children with celiac instead of just the one we originally suspected to have it. i would strongly recomment your parents test your brothers adn themselves for celiac every few years.

jenvan Collaborator
jenvan
Posted

Definitely have your immediate family tested...they have a 1 in 22 chance of having celiac disease b/c you do. (This stat applies to immediate family).

momothree Apprentice
momothree
Posted

Our son tested positive for celiac in May and it was recommended that our oldest daughter get tested (youngest daughter is only 2, so we will test her when the outcome is more reliable). Our daughter also tested positive, and had absolutely no classic symptoms. It's definitely a good idea. In hindsight, we can see some of the subtle symptoms that she had/has (only been gluten-free for 1.5 months) such as being tired all the time and grumpy much of the time, as well as brain fog. Of course, we are only speculating at her symptoms since most of them could also be personality issues. Another few months of going gluten-free should answer that question for us. ;)

Confused in Iowa Rookie
Confused in Iowa
Posted

Hi Becca - Just wondering how things are going with you on your type 1 diabetes. Can I ask how old you are? My son was diagnosed with juvenile diabetes at the age of 10. So far, it hasn't slowed him down at all. He's still very much active in sports, baseball, football, basketball and riding his dirt bike. Besides the few lows he gets when he is doing so much exercising, he hasn't really had any complications. I hope the same is for you.

My son was also diagnosed with Celiac's about a month ago. So we are struggling with that right now especially since he has no symptoms. Do you have symptoms of Celiac disease or did they just find yours in your yearly blood screening.

I have one other son and he is 17 years old. He hasn't been tested, but I am going to go get tested my self. I have a feeling this gene runs in my family.

rat toe Rookie
rat toe
Posted
  • Author
Hi Becca - Just wondering how things are going with you on your type 1 diabetes. Can I ask how old you are? My son was diagnosed with juvenile diabetes at the age of 10. So far, it hasn't slowed him down at all. He's still very much active in sports, baseball, football, basketball and riding his dirt bike. Besides the few lows he gets when he is doing so much exercising, he hasn't really had any complications. I hope the same is for you.

My son was also diagnosed with Celiac's about a month ago. So we are struggling with that right now especially since he has no symptoms. Do you have symptoms of Celiac disease or did they just find yours in your yearly blood screening.

I have one other son and he is 17 years old. He hasn't been tested, but I am going to go get tested my self. I have a feeling this gene runs in my family.

Hi confused in Iowa,

I'm 17 and I've had diabetes for about 2 1/2 years. Its gone incredibly well for me. I play tennis and lead a very active life. I do have the occasional lows or highs, but that is expected. Its great that your son is doing so well with his. my celiac was caught with just blood work, and then an endoscopy. I have no symptoms of celiac. I have been on the diet for almost a year now, but i see no change from how i felt before. Maybe as I get older I will begin to have syptoms, but who knows? Is your son doing ok on his new diet? I can recommend some great gluten-free foods if you would like. I know its tough sometimes, but sticking to it pays off :) good luck!

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elizmuller Newbie
elizmuller
Posted
hi my name is becca and I was diagnosed with celiac about a year ago. I had no symptoms, but since I'm type 1 diabetic, they do regular screening and they caught my antibodies for celiac. The problem I'm having is that even though I have Celiac, my parents don't think its necesssary to test my brothers for it--no one else in our family has Celiac, and my parents act as if its just easier to not know when it comes to my brothers. My GI said it would be a good idea to test them, but the pediatritian seemed pretty uninformed and basically said "well, theres really no hurry to find out because teenagers probarbly wouldn't stick to the diet anyways, right?" I was just wondering if there were any parents out there who had a child with celiac and how (and if) you came to the conclusion to test your other children. Any advice would be greatly appreciated.

This is my first reply ever to a message board! But I think this is a really important topic... My daughter was diagnosed with celiac disease last year at age 4 b/c she had quite a few obvious celiac symptoms. Just for kicks, we tested the rest of the family. To our surprise, our 3 yr old who has NO symptoms came up very positive, had the endoscopy, and definitely had intestinal damage already.

Our gastroenterologist thinks that b/c a lot of these autoimmune diseases overlap, it's possible we dodged a bullet and saved BOTH our girls from getting other things like diabetes, MS, and rheumatoid arthritis. That's just a theory that's floating around...

But regardless of what teenagers would want to eat, proven possible consequences of untreated celiac disease like anemia, osteoperosis, increased cancer risk, infertility, (and possibly increased chance of other autoimmune diseases) should be prevented if possible, and a simple bloodtest might do that for them. I'd DEFINITELY get them tested! Especially since you're asymptomatic yourself. By the way, neither of us parents have it, nor any extended family members so far! It's a mystery how our girls have it, but they certainly do and our youngest has her big sister to thank for getting it caught so quickly. Good luck convincing them!

-Elizabeth

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      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
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